“Why operate on a healthy person? Having been there, and seeing the improvement in my sister’s life, I think it was worth the risk. How often do we see a loved one suffering, and can actually do something about it?” — Charles Uzzell

Charles Uzzell is the youngest of five siblings. His older sister Monet’s kidneys had been failing for a while. The cause was a bit unclear. She’d had strep throat years earlier and doctors deduced that the streptococcal bacteria had caused damage to her kidneys. The cause, however wasn’t really the issue at hand for Charles, Monet, and the rest of their family. Monet needed a kidney and family members had spares.

Charles was the first to volunteer. “I had no trouble deciding,” said Charles. “But I appreciate the mixed feelings one has when deciding whether or not to give an organ. I am after all scared of needles and hesitant even to give blood.” He owned a Montessori school at the time and felt that he had the flexibility and good health needed to step up for the family. After being pre-screened as healthy enough to donate, he had blood drawn to see if he would be a compatible donor for his sister. Then he waited.

Charles was with his mom when the results came back. He was a perfect match! “This moment was the most emotional one of the whole thing. My mom and I both cried,” remembers Charles.

His sister was in California and he was across the country in North Carolina. He flew out to the west coast prior to surgery for evaluation testing including a procedure that, when described, scared him. The plan was to inject fluid into a leg and put a camera onto the kidney. “It turned out to be completely painless. I worried for nothing. This fact calmed me for the surgery.”

Pre-surgery, Charles felt “kind of goofy. Possibly too happy for the circumstances.” There was a woman in the bed next to him who was being prepped for a different sort of surgery, and was in a panic. “I was able to comfort her a bit and calm her down. This was a distraction for me.”

After surgery, he awoke to find his mom and another sibling in the recovery room with him. “I often sympathize with Mom because she had two kids in surgery on the same day,” said Charles.

This was May, 1994. Living kidney donation surgery was still being done using the open nephrectomy procedure. The less-invasive laparoscopic procedure used today was still being pioneered, making his recovery period longer and more painful. But, on the second day after surgery, he was able to walk down the hall and visit his sister. “She was doing great! My big fear was not that I would die, but that the transplant might fail or the kidney would be rejected,” said Charles. Despite some drug dosage issues that were still being sorted out, Monet had few surgery-related difficulties.

Charles’ total recovery time was about six weeks. After being discharged from the hospital, he spent two weeks at his sister’s house recovering before flying home. “Something that was very touching was that a volunteer drove me from the hospital,” remember Charles. “She continued to be involved in this small way.”

Twenty-two years after surgery, both Charles and Monet are doing well. “My sister is alive and happy. This was the best part of donating my kidney. Does that need to be said?” They celebrate the anniversary of the transplant every year. “My sister sends me music. It’s a little thing, but it means a lot to me and a lot to her.”

His advice to people like his sister considering a transplant it is, “be grateful, take your medicine, and stay healthy. Take care of your gift.”

His advice to others considering becoming a living donor is to “definitely do it. The kidney is fresher. That sounds weird, but this will be the best possible option for the recipient. It will make a huge impact in their lives. It takes them off of life support.”

Charles adds one last thing. It’s a complete miracle that humanity can do this. It’s just remarkable. To the medical profession – keep up the good work, I appreciate it.”

WaitList Zero occasionally publishes guest blog posts written by members of our community in the hopes of sharing viewpoints from various perspectives.

THE LIVING KIDNEY DONOR – TRIBUTE 4 AWARENESS CAMPAIGN

By: Risa Simon

Risa Simon, Founder and CEO TransplantFirst Academy

As a recipient whose life was profoundly changed by a living kidney donor, I’m deeply baffled by the absence of recognition for living kidney donors. I’ve spent countless hours trying to reconcile the magnitude of what I and many others have received. And though I know this has never been about a fair exchange—even if that were possible, my heart (and new kidney) are constantly seeking moral balance.

Last year, my creative mind conjured up a unique and simple way to deliver a small, but recognizable, improvement. The notion was to shed new light on our life-saving heroes who save lives by choice, not by death or medical necessity. The idea was to respectfully recognize their act as one of the highest levels of service humanity has to offer.

As the founder of the TransplantFirst Academy, I set out to seek input from other organizations in this space and received an overwhelmingly positive response. This prompted our organization to become the foundational force behind what is now known as: The Living Kidney Donor – Tribute 4 Awareness Campaign.

Our first target was to establish recognition for living kidney donors in the city of Phoenix. We achieved this status after the Mayor of our city signed a proclamation formally honoring living kidney donors for their brave life-saving acts. Our next target was to expand message visibility. We did this by launching a community outreach billboard campaign.

Our goal became two-fold.

Our main objective was to showcase the proud faces of living kidney donors and thank them for their life-saving service. Yet we didn’t stop there. We had a bigger plan, which was to inspire communities to join our movement to increase awareness in living kidney donation and inspire admirers and potential followers. Soon our standalone “Thank you for your service” initiative blossomed into a campaign that increased awareness and desire for others to personally contemplate this brave act for themselves.

Since living kidney donors don’t wear a Medal of Honor or a superhero’s cape, it’s hard to admire or emulate what they’ve done. Their decoration of a few scars is their only discreet distinction of lifetime achievement. Surely, we can give these brave champions more recognition for the role they played in saving lives.

Our nation’s organ shortage supports this campaign as a great call to action. Currently, nearly 10,000 people die prematurely or become medically disqualified for a kidney transplant every year. To add insult to injury, the number of people waiting on the list grows by 30% each year, as more sick patients face the same reality of need. The grim fact is that every year only 16 percent of the 100,000-plus waiting will receive their much needed replacement kidney.

Those who are fortunate enough to receive the gift from a deceased donor typically wait 5 years. Though there are some patients who are lucky enough to receive a kidney in a shorter amount of time, there are many more who wait much longer. Age also matters now. Many patients over the age of 50, who were approaching the top of the list after years of waiting, have lost their place in line due to new deceased-organ allocation.

This is just one of the many reasons living kidney donor transplants hold unparalleled value. Yet, until we can increase awareness and the numbers of living kidney donors (which has dropped significantly, including a 33% drop in 2015), we won’t be able to positively impact the futures of those in need.

This Campaign begins to address our moral obligation to do more. It starts by saluting those who courageously saved lives – and it keeps on giving by inspiring potential donors who might otherwise be unaware of this opportunity. Of course, living kidney donation is not for everyone. It takes a very special person to lean in this direction and a person in good health to medically qualify. To date, over 133,000 people have
been able to save an equal number of lives. These remarkable individuals give new meaning to the expression “Giving of self.” Let’s recognize these heroes and inspire a “heart-string” of potential followers.

If you are moved to join this campaign by expanding this project in your own city, we applaud your interest and welcome you aboard. If you are a recipient who has received the gift of life from a living
kidney donor, or a person who knows someone who has; or you are someone who believes in this initiative, take the first step now. You can do that by requesting a Living Kidney Donor Tribute 4 Awareness proclamation from your Mayor or Governor’s office. Often times a simple online search can lead you to that process.

You can also start to form a committee to help you explore billboard opportunities. Know that you don’t have to go it alone. Campaign art and special rates may be available. Check with the TransplantFirst Academy to learn more. Together we can achieve more, so let’s not let another day go by without taking action. It time to recognize those who courageously save lives and inspire others to become more caring and compassionate people.

While in college, Raegan Johnson’s mom started dialysis, but Raegan didn’t really know what it all meant. She knew her mom had lost a lot of weight, and that she was receiving treatment, but Raegan didn’t make the connection that her kidneys were failing. Her mom was very reluctant to ask a loved one to become her donor and had refused an offer from Raegan’s aunt. At age 24, Raegan’s older brother learned from his doctor that excess proteins had been found in his urine. He had been diagnosed with the disease too.

Fast forward six years. Raegan was preparing for graduate school when her brother, Reggie broke the news. His kidneys were failing. Reggie relayed his options: dialysis, transplant from a diseased donor, or the possibility of finding a living donor. His doctor had encouraged him to try to find a donor before resorting to dialysis, but it was tough for a big brother to ask his little sister to do something so selfless. Reggie’s mom helped broach the subject and Raegan agreed to be his donor – but she had to first consider her own health. “In college, I was very overweight. The first question was whether I’d be healthy enough to do it,” said Raegan.

She had work to do. She needed to get her blood pressure down and lose some weight. She lost 5 lbs., got her blood pressure into the acceptable range, and was declared eligible to donate. Some of those around her were apprehensive, and expressed concerns about the potential outcome of the surgery. “Maybe I was naïve, but I wasn’t too worried because I knew I was doing the right thing. Once I’d made up my mind, I was focused.” Raegan adds that her Christian faith also increased her confidence in her decision – in turn reducing her fears of the worst. “If this is how I was meant to go, then I would go having done the right thing,” she concluded.

Asked about how she felt post-surgery, Raegan’s response was immediate. “It was painful. I hadn’t had children, not even a broken bone. I’d never experienced major pain. It was more shocking than anything.” Her recovery time lasted 6-8 weeks.

Despite the discomfort and initial pain of surgery, her experience continues to be satisfying. “It’s the gift that keeps on giving, seeing my brother thrive and being the husband, the father, and the Christian man that he is. It’s a gift to see him do so well.”

Raegan’s donation also kicked off a journey for her to become a healthier person. “Because I didn’t have much of an appetite, I lost 10 lbs right after surgery. But it was such a blessing for me. I started exercising, making better food choices, and I began to see results.” Her journey has also involved becoming an advocate for kidney disease prevention, especially within the African-American community. She serves as a peer mentor for the National Kidney Foundation and her advice always includes a message to get tested. “We focus on breast cancer, which is important, but kidney disease primarily affects African Americans. Nearly 1 in 3 kidney failure patients living in the United States is African American. My message encourages individuals to get their kidneys tested and watch their diets.” Her advice to potential donors is to focus on making sure that each is in a good position to be a donor. “It’s not just about the recipient’s health. As a donor, your health should also be a priority.”

Twelve years after her surgery, her family is doing great. She’s lost a total of 60 lbs, and continues to lead a healthy lifestyle. Reggie is healthy and is off most of his medications. As for Mom? “After our surgery, my Mom reconsidered my aunt’s offer and was transplanted in 2006.”

Rori Block donated a kidney to her Dad in 2012. When asked what motivated her to do it, her answer was pretty straightforward: “He’s my Dad!” His kidneys had been declining for over twelve years. A handful of family and friends, including Rori and her brother were tested and she was the match.

She had a lot of questions for the transplant team during the first couple of meetings. She asked about life expectancy, whether she’d need to change her lifestyle, and whether she’d be able to have kids. “My fiancée and I love craft beer – would I still be able to drink beer?” she said laughing. The only deal breaker was the ability to start a family later on. “Once I found out that I would have the ability to have kids, I was relieved.”

Leading up to the surgery, Rori was nervous – not so much for herself, but that the transplant wouldn’t be successful. “That would have been devastating,” she said. The lead up to surgery was unique in the case of Rori and her dad. She’d been evaluated and approved to donate in 2010, but her Dad’s kidney function stabilized for a couple years and she felt a bit on-call for about two years. In early 2012, his kidney function started a sudden decline, and around April, his nephrologist said it was transplant time. In an effort to avoid dialysis, surgery was scheduled for June.

Post-surgery, Rori was up and walking around later the same day. She was super happy to see her dad. “The color in his face had changed,” she recalls. The next day was harder. She doesn’t do well on pain medication and she was in pain, especially around her stomach muscles where the incision has been made. Her operation took place on a Wednesday and she checked out of the hospital on Friday. She stayed with her Mom until she could take care of herself. Then she moved in with her Dad so that they could recover together. “Within a couple of weeks we were out to lunch, running errands and out doing things.”

Rori was off of work for 6-8 weeks. She felt tired her first week back and decided to take a break from her normal exercise routine for a while. Now, she feels normal. “Many days I forget. But I’m more careful now about certain things. I drink more water and if I’m not feeling well, I get to the doctor faster – just more careful.”

Her advice to potential donors? “You should do it! It’s seriously the best gift that you can give somebody. It’s so rewarding to see them so much better with so much more life in them because of you. It’s an amazing feeling.” She adds some advice for patients. “Patients should be open to accepting a donated kidney. I’ve heard stories that parents wouldn’t let their kids be their donors, but they should! You aren’t ruining your kid’s life. Plus, living donor kidneys last longer for the recipient. That alone should be a deciding factor!”

Kelly Gatlin’s husband Joe has Alport Syndrome, a genetic disease that he has had his entire life. They both knew that he would eventually need a new kidney. Joe had seen other family members with the disease languish on dialysis and he knew that he wanted to avoid it by getting a transplant as soon as his kidneys began to fail. He came home from an appointment one day and told Kelly, “it’s time.” Many family members also had the same disease, but Kelly was healthy. With the universal blood type ‘O’, she knew she would probably be a good candidate and started the process to save her husband’s life.

Evaluation results confirmed that she was eligible, but not a perfect match. In order to give her husband the best kidney possible, they decided to do a paired exchange, choosing a well-respected center in the nearby state of California.

Logistics and finances were a challenge. The coordinator at her local hospital lacked transplant expertise as did Joe’s local kidney doctor, which meant Kelly had to be a very determined self-advocate to get the process going. They traveled to California at different times for testing. Her travel costs were not covered by insurance and a 15-month old baby at home added to the stress. “I dealt with the situation by “making things happen,” said Kelly. “It was a huge task to take on. I had to be super persistent.”

Six months after starting the process, transplant day arrived in the summer of 2012. Joe’s kidney came from a 20-something male in Ohio. Kelly’s went to a 2-year old girl in New York. Joe was in the hospital for 5 days. “I was out in one,” said Kelly. “I guess I was showing off a bit. I got up out of bed the morning after surgery. I’d previously had a C-section and they used that incision to take the kidney out. The surgery pain was about the same as the childbirth. I felt a bit tired and the tiredness lingered for 3-4 weeks.”

Despite some discomfort, the most satisfying aspect of donating has been seeing that her husband is healthy. “We have a normal life. He didn’t have to deteriorate. I also found my recipient’s parents online and now I get to see pictures of the little girl as she grows. They moved to the U.S. from Singapore to save their child. We do what we need to do to take care of the people we love.”

Her advice to potential donors is three-fold:

“Don’t be afraid. If you feel moved to do it, then do it; surround yourself with positive people who are supportive of your decision; and find someone who’s been through it who can provide support.”

And her advice to patients?

“You need to reach out to people. There are people in this world that have a burning desire to do something big. Give them the opportunity to give you a gift. Most people know the joy of having a child, but this was better. It’s a gift that someone can’t buy. It’s a gift that they can’t give themselves.”